Fears still lie in the quiet dark

ViviAnne is back in the hospital. Friday morning around 4 she woke up with a stomach ache and a fever. I took her to the clinic first thing that morning to find her ANC at 100, her HGB at 7.8 and her Platelets at 78 all wrapped up with a temp of 102. So we were sent directly to the hospital. It is now 5 A.M on Monday morning, we are still here.

Over the weekend she has had a blood transfusion and a platelet transfusion. She has battled high fevers, low temps. and shaking. She has tested positive for C. Differential, an infection in the intestines/colon. It is painful and causes big potty issues. She is experiencing it all. On Saturday she sat next to me and moned for about an hour or so. Friday I spent most of the time in bed with her cause she felt so crapppy. Sunday she perked up but did have some icky times. Sunday her ANC was 10!

So, here I am again. Lying on an uncomfortable love seat thing with sheets that turn into a wrinkled balled up mess and I am facing my fears. I lie here with the all too familiar sounds of the hum of the air being filtered, the I.V pump squeezing fluids and the clock. The blasted clock in this room is loud! I can hear the seconds ticking away. My mind races as I go over all the blood work and tests they've done through the course of the weekend. Negative for Hepatitis, negative for Coomes, Pancreas working properly, Liver NOT going into liver failure yet. Liver enzymes high, Billy Rubin high, ANC low, HGB up but still anemic, Platelets up but still low......what does this all mean? I pull myself back from thinking the worst and just remind myself that she is sick and that is what this all means. SHE HAS LEUKEMIA DUMMY!

But still, here in the dark running on an average of 4 hours asleep a night, it is hard not to get lost in your fears. During the day I am distracted with tending to ViviAnne. Here in the quiet, but noisy, dark my mind turns and burns with questions and what ifs. And I think of Cooper. I miss my little man and feel like I am failing him. He is struggling with bad allergies and I just want to hold him. Love on him and listen to him talk. He is so funny.

The night in the hospital is lonely. You are reminded how isolated you are and how the world still goes on even though your world has been forced inside these four walls. It is a must in order for her to survive and I would not be anywhere else. But doing this again and again, and I think we are one of the lucky ones, can really do a number on your head. Facing demons and fears in the dark of a hospital room that no Mother and Child should have to face; and yet here we are.

Update

Just wanted to give a quick update. I'm sure Kristen will have a lot more info to share in the next couple of days, but until then...

ViviAnne was released earlier this evening from 7 West. From what I understand, all of her blood work (post-transfusion) and chest x-ray looked satisfactory to the doctors. I'll leave all the details to Kristen, but just wanted to let everyone know that she is home and doing well.

Thanks for everyone's thoughts and prayers.

Aunt Stacey

Back to 7 West

Kristen asked me to put up a quick post to let everyone know whats going on. I'm just getting bits and pieces from Brent, Kristen, and my Mom, but I think whats going on is...

ViviAnne was admitted to 7 West (Kosairs). She was looking really pale, had been coughing a lot, vomiting, and running high fevers. She had been fighting all this for a month now with antibiotics at home.

Her fever has broken but her lower left lung sounds diminished. They are concerned she is heading down the same road she was on last fall with the exception that they caught it much sooner this time.

I think her ANC was at 940 (which means she's neutrapenic) and her hemoglobin at 7.4, so she was given a blood transfusion. I think its going to be a kind of "wait and see" situation, so I'll update when I know more.

Aunt Stacey

HAPPY DAY!!

After two weeks of me being just a ball of anxious irritability today my feelings were relieved! We went to clinic to check if we could get ViviAnne to start responding to treatment again by a drastic increase in chemo and....SHE DID!!! The very minute Dr. Ayyanar said her ANC is 1700 I smiled so big and just wanted to jump up and down. I was so relieved and excited! She is responding to treatment!! Relapse averted!! YAY!! They are going to maintain this very HIGH dose of chemo as long as she tolerates it and IF she stops responding to it then we will just cross that bridge when/if we get there. I am not even thinking about that. I don't want to think about it. Today she is responding to treatment and her cancer is still being held at bay!!! YAY!!

Today is Brent's birthday and what a wonderful gift for him to have, a daughter who is staying in remission!?!?! So excited!

They are thinking she has asthma because the allergy medicine they put her on 2 weeks ago is not working at all! She has coughed and coughed for nearly 7 months and the only time she was ever under control was when she was on breathing treatments. I was against the asthma diagnosis months ago but now I am thinking that might really be it. She coughs all the time and if she gets upset she coughs so much she has a hard time catching her breathe. We go to the asthma doctor next week. They want to hold off as much as possible on any further X-Rays or C.T's because they do not want to further radiate her unless absolutely necessary. Which we appreciate.

So, today is a GREAT day. The sun is out and it is cold BUT I am on a high today. Which is good because I've been in a pit for 2 weeks!

I would like to thank everyone for their prayers over the past year and a half. And especially the past 2 weeks.

March 12, 2010
CRAP!

Well, ViviAnne had treatment today and it was not good. She fought every move we made just like she did in the very begging. I told her we could do it the hard way or the easy way and I really wanted her to chose the easy way. Well, I don't think she was falling for it so it was a 3 hour battle from finger poke for counts to when they came into her room at OMO to sedate her for her LP.
And to add insult to injury, her ANC had doubled from last month when they increased her chemo. So, basically her body did the direct opposite of what they wanted it to do. Her ANC was 6200 and her Hemoglobin had decreased a bit. I did not like the look of the blood work at all. The Nurse said they weren't thinking relapse but Dr. Ayyanar jumped on it and maxed out her chemo on all 3 different types. Which I appreciated. I mean, come on lets be proactive and avoid relapse at all costs! We will go back in 2 weeks to check counts again. They need to know sooner if she is responding to the increase like they want or if it will puts her counts too low. I personally do not think it will put her counts too low but I am praying that her body will respond to the increase in chemo and we will bring down the ANC. I hope I am explaining this all correctly and letting you

know that even if her counts do not respond correctly it does not mean for sure that she will relapse; but the thought is if the ANC stays too high for too long then your chance for relapse is higher, because you are not responding to treatment. ViviAnne, bless her heart, has not been responding according to the books for a year now. A lot of her cancer has not been by the book, not even the symptoms for diagnosis. But hey, that is how we do things in our home. We do things our way and not the way that is most popular and we still seem to pull it all off.

On a happy note, the new meds. they used to sedate her for her LP worked wonderfully. She simply went to sleep and woke up as if she was napping. I asked her if she thought her sleepy medicine went okay at the hospital and she said yes. We didn't talk about it too much. I am thinking that part of the reason for her being so hard to handle during the day was because of the fear of having a bad experience at OMO like last time. So hopefully the next time she has to go to OMO she won't be so afraid.

Her hair is beautiful and people comment on it a lot. I think in one way she does not like adults at school to dote on her hair because it is a reminder that she is different. She has been quite the handful the past 3 -4 weeks with attitude and anger and everything seems to be an arguement. We are trying to work with it the best we can and often I question if we are doing it correctly. Constantly wondering if it is the cancer and chemo or just her. But, maybe with her blood work getting all out of wack this past month added to the frustration inside of her. God only knows and it is going to be through his strength that we will get through this next year. Praying for her to respond to treatment and not relapse.

Best wishes to everyone as we welcome SPRING!!

Updates are back!!!!

February 14, 2010

Happy Valentine’s Day!!

Okay so we have not abandoned the blog. I have other posts that I have written and not posted but I just thought I’d add on to this one and try to consolidate a bit.

Christmas was good for 2009. A bit stressed but I don’t think we were any more stressed than the average family. We were home for New Years and the month of January went pretty smoothly. We have been running really high ANC counts for months now so the Docs increased chemo this past Friday when she was in for treatment.

But let’s back up just a bit. January 30^th we celebrated Coop’s 3^rd Birthday. Brent and I made him a John Deer cake and all of his Grandparents were able to make it in to see the big boy blow out the candles. What a sweet funny boy he is becoming. He will look at you out of the blue and tell you he loves you or that he likes you. And then that is it; he will go right back to whatever it was he was doing. So sweet.

ViviAnne is really enjoying Pre-K. She is staying 2 days a week for a full day and I have already told her that she will not be enrolled in Kindergarten next year and she doesn’t care, she wants to stay with “the little kids”. She doesn’t understand fully what that means yet but she’ll figure it out.

OH, ViviAnne finally grew!! She is 40 inches now! So exciting to see her grow and change. Her hair is thinning out again and the Docs said that it can happen that you just never know how a body is going to respond to treatment. I am thinking it is just going to thin and not fall out completely, that is my guess.

We have exactly 12 more treatments and 4 more Spinal Taps and we will be done. I have a knot in my stomach even typing that. I know I should be doing this joyous countdown but I am not. I am afraid to get excited about it and then the shoe fall and the dreaded happen. I know many of you are thinking I am crazy and not finding the joy in it but it is the Chemo Mom curse. You want to be joyous and you are but the fear is so real and so present that it robs you of it. And considering that the hypothesis is that a child who runs consistently high ANC’s is more likely to relapse…well that is her. For 11 months now we have been battling keeping her ANC in the range that is optimum. The only time she gets into that range is when she is sick and then it jumps right back up again. So yeah knowing these facts that I HAVE to know steal my joy of a countdown. Because the light at the end of this repulsive tunnel is growing bigger and brighter then it was last year and I know this time next year, God willing, the Light will be right on top of us! So I’m praying for no relapse and for somehow to find the joy, for my family’s sake. They need me to find the joy in life again, they need me to “get back out there” and I pray that I can and will and I pray it will be sooner rather than later. It can only help us at this point, can’t hurt.

While at clinic Friday ViviAnne was playing with another little girl about her age while in the waiting room. They were equal in their noise level, which for those of you who don’t know is LOUD, and they sat on the floor and giggled and played the Memory game. Then came the triage nurse calling the other little girls name. These two very small little girls stopped giggling and squealing and got completely silent and just starred at one another. The little girl put the cards down, got up and walked through the door leading to the exam rooms and treatment room. ViviAnne said nothing just told the little girl’s mother that she did not need help cleaning up the cards. She silently picked up the cards, turned and handed them to me and then sat in my lap, never speaking a word. I had to choke back the tears. To see these two very little girls with kindred souls about such things you pray your child never encounters share a moment together that was so tangible to me and heart breaking all the same. To see them ripped from their childlike innocence right there before my eyes was so hard.

ViviAnne has such a nurturing soul and she really thinks through things pertaining to feelings and hurts I know that she is meant to touch people far better than I, myself, ever dreamed. I am so blessed to have my children. I hope I can be successful in showing them that.

Below is an older update that never got posted...

December 21, 2009

MERRY CHRISTMAS!

First off, thank you to everyone who made our first ViviAnne’s Halloween at the Hallow and Golf Scramble such a success!!! Even with the cold and horrible wind I think a good time was had by all.

ViviAnne had a rough time in October and November with a cough that actually started in September and well it finally landed her in the hospital for 6 days. They determined that they (The Docs) would not diagnose it as asthma but Reactive Airway Disease, which is treated the same as asthma only it isn’t a lifelong diagnosis. And as long as she does not seem to suffer from other symptoms in the near future they will leave the diagnosis as such. SO FAR SO GOOD!!

Because of the cough and all the antibiotics and the flu going around she missed all but 3 days of school during the month of November and pretty much the last 2 weeks of October. But once she started back in December she has been great! She really missed school and once back she got nothing but smiley faces everyday! She was so glad to be back I think she didn’t want to rock the boat any.

December’s treatment included the dreaded spinal tap. And it was AWEFUL! The spinal fluid was clear, which is good, but the after effects from sedation were the worst they’ve ever been! She always initially wakes up telling me she loves me and that I have 4 eyes and then she turns into this anxious, crying, angry with a mix of scared little girl. But after about 30 minutes of that she settles down. NOT THIS TIME! This time she turned from the sweetness to the other very quickly and she was hallucinating! It was awful! I cried. I couldn’t get a grip. Thankfully the Anestiaologist was there and she took care of both of us really. I didn’t know what to do. ViviAnne kept jumping and yelling, “WHAT WAS THAT!?” and then she’d ask me to hold her but when I would get close to her to hold her she would get jumpy and tell me to go away. I didn’t know how to console her without aggravating the situation. It went on for about an hour. They’ve decided from now on to put her to sleep with a different drug that does not have all the psychotic side effects but does come with a bit more risk while as

leep. Like needing oxygen while in sedation but that the wake up is much better and I have heard of other Chemo Moms talking about this form of sedation and it seems like the older kids like it better because the wake up is not so terrible. So we will see what that one brings. All I know is Friday was HARD! It took me DAYS to recover. I don’t think I ever will. This too will go into my memory bank of the horrors she and I have faced together with her bearing the brunt of them.

Which always leaves me wondering what she will remember? I have been told that, as with many things, time will erase the memories and she will only subconsciously remember but that her ability to truly recall the horrific feelings will fade. This is the only thing that gives me hope that she can have a childhood. I will carry the memories with me forever. And, I am sure, that this memory will be filed away and rear its nasty head from time to time. Just as these memories did tonight as I lay trying to sleep.

While at the dinner table tonight I looked over at Cooper who will be 3 in just six weeks. The exact age ViviAnne was when she was diagnosed and we were signing off on all the protocols that would govern and save her life. And I thought to myself as Cooper was tearing into his chili, what a baby he is. What a baby she was and how I would love to take back some of the things I have said to them over the past year and a half. It makes me question why we were given a sick child. Not a “whoa is me” kind of questioning but rather a why was this beautiful child with cancer entrusted to us to raise? Brent and I aren’t exactly the poster parents for patience and so why would this stress be given to us? What are we supposed to learn and/or take away from all of this? Will ViviAnne remember all the times I’ve lost my patience or ended up crying in the closet? Will she only remember the hurt at home and not the laughter? Have I given her enough laughter? These are the questions haunting me tonight as I replay memories in my head of things I wish I’d done differently and hope she and Cooper don’t remember.

It reminds me of the Ghost of Christmas Past kind of thing. Like here, Kristen, let’s look at how you lost your cool with your toddler while she was in the hospital getting chemo. (I put her in time out in her hospital room. What kind of mother does that?!) Or let’s look at last Christmas when Brent and you got into a yelling match after him losing his cool with the kids and then I ended up crying on the floor in the laundry room, “Merry Christmas!” were not the words I would have thought of then. How about the times she had to be held down by me and others to get poked by needles, me the woman who is supposed to protect her from all harm. And the time when she fell down on week 2 of treatment and I had no idea that her feet and legs were giving her as much trouble as they were and while I held her hand she cried and said pick me up and I told her no that she could get up by herself and really in truly she couldn’t. I can still picture her little body on the ground holding my hand crying and I said put your feet under you and push yourself up and then she cried some more and Daddy did pick her up but I was SO clueless I just didn’t see that she was not capable of getting up. She wasn’t just a toddler throwing a tantrum. I still cry when I think of it. Oh how wronged she must have felt by me. Her Mother wronged her in a desperate time of need. I deserve Cancer, not her. I deserve whatever physical punishment God can think of, but unfortunately I do not get any, she does.

The plan for this year is to be better and to DO better. For Christmas we will go to Grandma’s and Nana’s and have a Merry Christmas…we shall see.

ViviAnne's Halloween @ The Hollow

Time for Reflection

Well it is night and the house is quiet. Both kids are exhausted because of all the comings and goings with ViviAnne going to Pre-K every day and today she started DANCE!! YAY! So they both fell asleep on the couch at about 6:45! Crazy, I know!

The past few weeks have been great! Don’t misunderstand me there have been plenty of squabbles between the kids and me fussing at each of them but we have truly been blessed! ViviAnne is enjoying school and comes home every day with smiley faces (their form of grades) and only a few “needed a reminder” faces but those are ALWAYS for talking. She has been 100% with her helping others, following directions, learning prayers and language skills SO I can deal with the talking because I figure the other stuff is where it really counts! Her temper seems to be getting a bit better too. Sure she has her freak outs and melt downs but she is 4 and we are working on it. But I cannot tell you how incredibly happy and overcome with joy that she is where she is today!!! I could not even see this place a year ago. I longed for it but I did not truly understand the meaning between having a “normal” child and a “sick” child till now! She is still sick but she is getting to do “normal” things and loving it!!

I asked her last week if she had told any of her friends at school about her port, and she responded with “No” and a look like “are you nuts?” Then I asked if she had told anyone at school that she has Cancer, to which she said, “NO” again with the look of are you nuts. So I explained she did not need to tell anyone at all I just wondered and there was no need to talk about it with her friends at all. She just went on back to eating her lunch and never said another word about the subject. I think she knows she is different with her Cancer and her hair (all though it is too cute) and she just wants to keep it under wraps. I can’t say that I blame her.

Today she was explaining to her Daddy and me that her hair MOVES NOW!! Like in the wind when she rides the horses on the play ground. She was VERY happy about it. Too funny how much she takes in, it is no wonder she is wound a bit tight with her temper. She has been through hell and back and has no idea why or how to cope so she just loses it when she doesn’t understand simple things now. Everything is a threat I guess. But, like I said, we are working on it.

At Dance tonight she was so sweet. When I told her she was starting dance today she just smiled the biggest smile and said, “Will I get to use my ballet back pack and shoes?!” I have learned not to tell her things until maybe a couple of hours before it occurs because she just gets so worked up. And in cases like this she would imagine all the things that she would like to happen and if it didn’t play out like she had in her head then she gets upset. I guess we are all a little like that but I just keep her on a day to day schedule except with school. It works better for her little mind. ANYWAY, when we went to ballet she did everything the teacher asked and smiled and would sneak a quick wave to me every now and then. At the end of class a little girl had an “accident” and ViviAnne rushed over to her, put her hand on her back to comfort her and had this very worried look on her face because of the girl crying. To which ViviAnne says, “she just needs her Mommy” as she pats the little one on her back. All the other little girls just kinda stared but ViviAnne ran to the rescue! It was so sweet to see her concern for her.

I did have to leave the room at one time because I started to cry and there I was again being the emotional Mom but this time I got away from people BEFORE the tears fell. I watched her walk on her tip toes in a line across the room. I watched so closely as just 11 months ago this was one of her physical therapy moves because she did not have the strength in her legs to walk well. She sort of swung her right foot around and the left was very unsteady. And to see her do this nearly across the room was just over whelming to me. To see how far she has come and to know that no other girl in this room (THANKFULLY) has had to travel her road was just a lot for my heart to bear. I was thankful. Thankful she is here today, thankful Cooper is happy and tearing the place up like a normal 2 year old boy, thankful that today she has not relapsed and even though she is tired it is from her “normal” life not her “sick” life!! Thank you, God, for getting us through this battle! Even though the war is FAR from over I feel victorious today.

Update

I know it has been a long time since an update but I am having a hard time finding the time to write an update that is worthy of posting. So, here it goes.

Last Monday ViviAnne started Pre-K! How exciting?! She is doing wonderfully in school and seems to be adjusting well. On her very first day of school I asked her if she wanted Mommy to drop her off or walk her to her classroom. There was a rather long and silent pause from her to which I knew she was giving it some serious thought. Then, to my surprise, she answered back, “I want you just to drop me off.” I was floored. I explained to her what that meant and she said back, “I know I know I want you to drop me off.” So I did. Except she did forget to grab her backpack on the way out of the car so I did have to get out to give it to her and she was in serious, school mode. Actually I think she was overwhelmed and a little scared but the point is she did not say a WORD or even look around she just kept her eyes straight ahead and walked towards the doors with her teacher. I was standing there waving and saying, “Bye, ViviAnne, bye honey” and she never turned around or anything. I think the only thing she could hear was her heart beat and own breathing at that point because the teacher had to lead her with her hand on her shoulder. I, on the other hand, heard nothing but her silence and my heart breaking. I returned home to tell Brent what had happened and he just smiled this understanding smile for me but proud smile for her. Then Cooper and I went to my Moms and I told her and cried. I was that Mom standing in the carpool lane, blocking it even, begging for their child to wave. For the next two days she did not say good bye to me when she got out. Then on Thursday I heard her little voice say, “Bye, Mommy!” And I turned and looked over my shoulder to see her turned around and waving. I nearly wrecked the van as I arched my back to wave and yell, “Bye HONEY!”

Tuesday was ViviAnne’s 4^th Birthday. She had a wonderful day and even came over to me at my Mom’s house while we were getting ready for dinner and gave me a hug and said, “I really do like my Birthday, Mommy.” She had gotten a bit sassy early so I think she thought I was upset with her. I was with the sass but not with her for the day or anything. She received a Pink Soccer Ball from my Mom for her birthday which she was so excited about she stopped opening the present when she realized what it was and started to jump up and down and squeal. I guess she liked it?! I had to finish taking the wrapping paper off. She had decided though that she was NOT 4 until after she blew out her candles on her cake. So the next day at school she was on the playground throwing her hands in the air while yelling, “I’m 4 now! I’m 4 now!” Too funny.

Friday ViviAnne missed school for treatment. She did not want me in the room while they pricked her finger for her blood tests. She instructed me to stand in the hall. She could see me because basically I stood in the doorway but that was where she wanted me. She looked at the tech and said, “I’m 4 now so I am a big girl.” She did not cry when they took her port out this time but you could tell she was trying REALLY hard not to. She just laid her head on my just and wimpered a little bit.

She was diagnosed with a sinus infection while there and they also informed me that, yet again, her counts are too high! CRAP!! What does this mean?! She can’t have her 6MP pill increased (that is her daily meds) it is already at 100%. They can still increase Methotrexate and Vinchristine but those are the MORE toxic drugs so I’d rather not, but if that is what HAS to be done then we will. They are gonna wait and see what next month brings. They also ran a count on her IGG. It is a part of her immune system they can increase for fear it may be too low. So they told me not to be surprised if I get a call to bring her in for an IV drip in 2 weeks. We shall see. I have no idea how a low IGG and a high ANC go together but I do plan on calling and asking this week. I am just a tad nervous about these high counts, AGAIN!

She is tired and emotional this round of steroids. No real hunger yet but the tired part hit pretty much the day after treatment. But with school and a sinus infection and CHEMO who wouldn’t be tired. I’d want to just crawl in a hole with all that. But she treads on and is very excited about school this week too.

I’ll update about IGG and high ANC as I get the info. I will even post some pics from school and birthday.

ViviAnne is 4!!!

Fall Fundraiser

Written by Aunt Stacey

Everyone mark their calendars for October 17 2009...we are having a fundraiser for ViviAnne's treatment! It is going to be a Family Fair type of event in Oldham County so come on out and bring the kids to have some Fall FUN!! Music, food, games, cornhole, and much more. We will also be doing raffles and silent auctions on donated goods and services.

We are still working out the details, but wanted to give everyone as much notice as possible. More info to come soon:)

PHEW!

Let me see, where do I begin? Well, I suppose I should start with some exciting news. The increase of ViviAnne’s Chemo did the trick, her counts have all come down but not below the cut offs!! SO they are going to keep her at this increased chemo level and she seems to be tolerating rather well. She is such a trooper. Steroids have been rough with the attitude this go around BUT it could also be do to the fact that she has had an INCREDIBLEY busy last week!!
Here is how it all went….
Monday through Wednesday of last week ViviAnne attended Cheerleading Camp at my niece’s high school. Madison, my niece, is a Varsity Cheerleader and they do this for a fundraiser. ViviAnne was permitted to go into the 2nd grade group with her cousin, Abigail, because the two of them are attached at the hip when they are together. ViviAnne had a GREAT time. What little girl wouldn’t, she was encouraged to yell and jump around while INSIDE. These are two things that are frowned upon at home; she was loving it! GO REBELS GO!
Thursday morning was her Chemo day and the start of 5 days of steroids. She did as usual. No tears until after they took the needle out of her port. It is like she takes all her energy to keep it together and then the moment it is over she just lets the tears fall. My heart breaks for her. To think of how my very young little girl has the ability to pump herself up mentally and emotionally for all that she has to endure and she responds like I would and I think ANYONE would, with tears when it is all over. It is really something else. I was told more than once this weekend that she seems more mature than a 4 year old and in a lot of ways, she is!
ViviAnne was a flower girl this weekend in a wedding for Cousin Debbie’s daughter, Shelby. So, we had quite a few things to do over the weekend after an already busy week. Thursday evening we went to a cook out and both ViviAnne and Cooper swam and met one of the ring bearers. We had a good time and the kids loved swimming, as always. Cooper even went down the water slide and LOVED IT!

Friday Kim and I took ViviAnne to a bridal luncheon where she wore her fancy dress with her pink pearls and she was very well behaved. Shelby gave her the cutest bear from Build-a-Bear that was decked out in pink princess, ballet wear and even with a cell phone and crown, right up ViviAnne’s alley. Shelby recorded herself saying, “ViviAnne , you look FABULOUS!” and when you press the paw that is what you hear. She just loves it! That evening was the rehearsal and she practiced pretty well and then the dinner at Captain’s Quarters, she really enjoyed watching all the big boats and ducks and she is a BIG fan of Shelby. In her eyes she is the best thing since sliced bread.

Saturday was the big day! Poor Shelby and ViviAnne were off to a rocky start. But after a little bit of sprite and fanning and some bribery, only for ViviAnne though, the wedding went off BEAUTIFULLY! ViviAnne walked down the aisle and smiled when told to and stood where told as well, the only thing she did not do was drop the petals onto the floor. I think we had spent so much time telling her NOT to drop her petals and putting them back into the basket she just thought they were not supposed to come out of the basket at all. She really was precious and Shelby was GORGEOUS!
ViviAnne and Cooper both danced and Cooper behaved himself BEAUTIFULLY! ViviAnne on the other hand I think had just had enough. She was in tears and fighting with her Daddy and by 9PM she was up in the room ready for bed. She said to me through a little bit of tears, “Mommy, it was just A LOT! I’m sorry I behaved that way, but I am tired,” And you know what, I could not argue that at all. She had so many people she didn’t know telling her how cute she is and wonderful she did and couple that with being tired and on steroids and you get one worn out little girl and one worn out Mommy.

Needless to say Sunday and Monday have both been low key at home days. She did not even want to play outside today and the weather was wonderful. But I was not going to make her because honestly I did not care.
I was telling Brent how worn out I was and kind of complaining but you know what I take that all back! How lucky are we to be able to do these things with her?!? This time last year she could barely move from all the pain of the chemo and swelling from the steroids. We weren’t sleeping and all I could think about was, please let her survive! I mean exactly ONE YEAR AGO this is what was happening. I could not have even dreamt that I would be able to do cheer camp with her or allow her to be a flower girl! And now, I just PRAY that she does not ever relapse so that we do not have to relive that horrible HELL! Oh man, what a difference between Induction and Maintenance!! God is good and I have realized that somehow along the way I have embraced this life of Cancer. No, it is not a life I would have chosen and yes I do still get upset when I think about all that was taken from me, things I will never know or the fact that the constant steroid levels in my baby have altered her from who she could have been BUT I try really hard not to dwell on it. I allow myself to have the feelings but I don’t dwell. Because this is my life, I can’t change it and I have no choice but to try and make the best of it. It is kinda like Brent says, “If you want to see God laugh, think that you are in control.”

Tomorrow is the 16th!

Daddy Writes:
I sat down at my computer tonight like I do every night after everyone goes to bed and the house is finally quiet. But unlike the typical nights I didn’t open up Autocad and get busy working on drawings or jump onto Facebook to follow everyone else’s life and procrastinate working. I didn’t check my email or the bank accounts. I just sat down and for some reason lost control of my emotions. Today was a normal day; no more stressful than any other, normal fights and fits, one kid went to bed easily, the other required some work, Kristen and I had few squabbles but nothing major.

I could not figure out what the hell was a matter with me. I thought to myself that I haven’t been a mess like this for a long time…for like a year…and then it hit me like a ton of bricks. A little bit of panic set in. I had to find a picture or something so I started digging through the archives of my hard drive with some sense of urgency. I kept going further and further back in time. I could not find what I was looking for because I didn’t know what it was. The process of scavenging through pictures and blog post and old emails was like a horrible series of flashbacks. Like you would image your life passing before your eyes with every thumbnail and preview recalling a time or memory but everything that popped up on my screen was in the last 12 months. And then this image popped up…

And I realized it was what I was looking for and I just flat out lost it. This was one of my favorite pictures of ViviAnne before she was diagnosed. As stupid as it sounds, it’s like my subconscious had booked marked today’s date. I couldn’t remember my life before July 15^th of last year.

I continued to dig through emails trying to recover what I was doing, what I thought and cared about because I clearly don’t anymore. I don’t remember a lot of things from High School and College…but there is a logical explanation for that. Why can’t I see back just 13 months ago? The more I think about it the more I realized that I have been doing this for the past few weeks leading up to today. Taking ViviAnne yesterday to meet people and see jobs I work on in 2007, All of us going to Lexington in the middle of a day on a Monday just to stop in at RTA just to say “Hi”, Driving by the old house, Quitting my job (maybe…maybe not), just to name a few. I have been numb for a long time. I miss who she was before all of this. I miss who we all were before this. I hate that Cooper has seen the worst of me. I miss the relationship I had with my wife. I miss our friends. I’m tired of telling everyone we are "fine" and "doing great". I hate who I have become. I WANT MY LIFE BACK!

Sorry for the pitty-party but that is today in my life.

This is me closing a chapter…Tomorrow is the 16^th!

Hair Pics from Aunt Stacey

HAIR!

Delayed Update

A week ago ViviAnne received treatment. Her counts were still VERY high so one more month and then they will need to adjust her chemo pill to a higher dose if the counts remain high. As stated before, too high of counts means her body is processing the chemo too quickly and the chances of relapse are higher when counts remain too high for too long. It is all a balancing act. This time the chemo seemed to hit her hard! She was her usual angry, hungry self from the steroids and she had NO energy. She would want so badly to play, and would for a bit, and then she would go and lay down. You could tell she just did not feel well and was angry that she didn’t feel well. It took about a whole week and then she felt better. She has such an attitude this week too! But this could be a 3 year old with chemo brain too. Not a good combo.

Her hair is really growing and she has a cute little tan from swimming and her hair is getting white from the sun. I think it might be curly. The whole back of her head is wavy and the sides are long enough to be over her ears now and it is starting to curl up too. We shall see!

Even though this time of our live is trying I am reminded daily by acts of kindness from friends, family and strangers that God does have his hand in all of this. It is really comforting to know people are out there praying for us and supporting us through all of this.

Thank you Jindy and Christy...

Brent’s cousin, Christy, and her new husband Jindy have written very encouraging words on the blog and sent cards with words of prayer and encouragement as well from the very beginning of ViviAnne’s treatment. Well, now these two beautiful people have even gone one step further. They asked all of the guests at there Texas wedding reception to not bring them gifts but instead to use that money and donate to ViviAnne’s Fund! HOW AMAZING and UNSELFISH is this!?!?! To forego wedding presents so our family can have a bit of the financial strain lifted is too awesome for words!! We thank you for all of your kindness and love, Jindy and Christy. And to your guests who donated as well. Thank you!!

HILARIOUS!

**This was written by Kristen last week.

ViviAnne has had a good week this week. She is still her sassy, strong willed self but she is sooo funny too. Lately it has been all about dancing and gymnastics at our house. She loves to dance and watch others dance and do her gymnastics “tricks”. I will be finding a place that offers both of these services to her if we can swing the money. I wish I could somehow explain her dance moves. Simply writing, “With one hand on her hip and the other arm out stretched she shakes her little hips and taps her foot” REALLY does not do the dance justice. It is too funny!!

And Cooper! OH MY! Today I squirted him with water while we were at Grandma’s pool and he thought it was funny. Well, then he got out of the pool and I went to squirt him again and he said, “HA HA HA, you can’t get me now!” He is so funny and SMART! With the two of them being so smart and close in age I am gonna have to really work to stay one step ahead of them. We’ll see how it goes.

I’ll up load their Mother’s Day Out pics too. They are very expressive of their personalities. Ms. ViviAnne with her “sassy, dance pose” and Mr. Cooper and his “laid back, cool guy pose” and according to the director these were not poses the photographer told them to do. Just told them to pose and something along those lines and my kids being so comfortable in front on the camera went into full on “cheeeeese” mode.

It is late and I had a good day with them today and yesterday so I am not gonna get into some of the bad things that have happened over the course of the past 3 weeks and just go to bed basking in my children’s humor and innocence. Chemo is next Friday. YUCK!

Update

I definitely think this time the coming OFF of steroids was worse than being ON them. She has lashed out more being off of them but we are working on it. On the plus side, her sleeping has gotten better the past 3 nights. She was only sleeping for about 5 hours while on the steroids but she has slept through the night for the past 3 nights. This is a HUGE help to my sanity. I am a person who needs sleep and although I do not get it I can only tolerate no sleep for so many days and then I physically get ill. Back when she was first diagnosed I could go a week straight with very little sleep before crashing, now about 4-5 days is my limit and then I’m sacked out, so her timing was perfect on sleeping through the night.

ViviAnne was looking at pictures online of an 11 year old boy she knows from clinic, Jesse, who we have referred to in previous posts, and she said “Oh, he looks like a PRINCE!” He was dressed up and she thought he looked nice. She thinks any man dressed nicely with a “Mommy” must be a Prince so this was a complement to Jesse.

She and Cooper were playing last week, and by playing I mean rolling on the floor, and Coop all of the sudden stands up and says, “Ouch, Sissy, you hurt my port.” As he is holding is chest in the exact spot she has a port. I tried very hard not to laugh but did tell him he doesn’t have a port. She is convinced that one day he too will get a port and telling her other wise is like spitting into the wind, so I don’t.

She is doing great besides the temper this past week, hopefully that will fade too and then we will go in for another treatment, but this is our cycle. I think of the ebb and flow of the ocean waves when I think of her cancer treatment schedule. And like the waves sometimes the crashes and roars are very loud and turbulent. But with the help of God, family and friends we are navigating through these waves.

Update from Kristen

I took ViviAnne to clinic this past Friday for her monthly round of chemo and steroid start. She did great, as usual. She cried a little because she didn’t get to go to the hospital! (Yes, you read that right.) They spoil her over there and she doesn’t mind going and playing and getting all the attention. She is always given a drug that erases part of her memory of the day so she NEVER remembers her actual treatments. So she was upset when she was told, “No hospital today,” Oh, the mind of a 3 year old!?

This round of steroids hasn’t been as difficult as last month, so far. She hasn’t complained about her legs either so she must have tolerated the chemo pretty well. Her counts are VERY high. So high in fact that if they remain this high next month they are going to up her 6MP (daily chemo pill) dosage. This pill is supposed to suppress counts some and if it is not doing so then there is the risk it is not high enough and doing its job of ridding her body of cancer. Was that clear? Let me break it down a bit more. If the 6MP dosage isn’t high enough for a long period of time or isn’t working then RELAPSE of cancer is the side effect. It is this weird balancing act. You don’t want too low of counts BUT you don’t want too high of counts either. So we will see what this next month holds.

She has been very active and you can tell that all last week she felt great. She is REALLY testing her limits now with us. That whole "I’m gonna do what I wanna do" is in full bloom. Her pediatrician assured me to just stand my ground with her so we as parents can run the house, not her. She has for about 7-8 months SO regaining our control is going to be a long, long, LONG road but it is a road we need to travel.

Oh, here is a new funny line of hers. “You are ripping my sound!” This is yelled at Cooper when he interrupts her while she is talking, and she is ALWAYS talking. She has also discovered funny faces and is trying to figure out the concept of rhyming. It goes a little something like this, “Bruce…..that looks like bruise. You know bruise on my leg.” So she is getting that words sound similar and can pick out words that kinda match but the rhyming still hasn’t come yet. She can also add the number 1 to any number 1-5 and know the sum. She calls it her “plusses”. She’ll say, “1 plus is 2, 2 plus is 3...” and so on. She doesn’t always think to say the 1 but sometimes she does. But boy oh boy she has it down pat! She can mix it up and start with 4+1 and then move to 2+1 and such, so it is no longer the pattern she has memorized but actually how to do it! I personally think this is AMAZING from a little one who does not attend preschool or day care. The Mothers Day Out program works on letters, not numbers. Isn’t she great?!?!?

Her hair is BEAUTIFUL! It has grown in even and thick and is a darker blonde than it was before but is blonde still. People ask me if I’ve cut it because it is all even and thick. I just say, “Cut it?!?! No, it is growing in!” If I tried to cut her hair she would lose her mind on me! Well, since everyone is doting on how great her hair looks while getting her ready for church on Sunday I asked if she wanted a hat and she replied, “No, I want people to see my beautiful hair.” Fair enough. Show that hair off, baby!!!

Where has the time gone?

Sorry it has been so long since our last post. I can’t believe we’ve neglected the blog for a month! Rest assured we will do our best to not let this happen again.

Let’s see, where do I begin? Well, ViviAnne received her Vinchristine and Spinal Tap with Methotrexate on April 10th and did wonderfully. She was a little pissed when she woke up from the spinal tap but this has become to be expected. Her initial wake up is always the same, “Mommy, I love you. How are you? You have two eyes.” The last part she means two SETS of eyes. And then once she becomes more coherent she doesn’t remember helping to push in her meds, because that is the highlight for her getting to help push, and she becomes angry because she doesn’t remember pushing it and thinks she hasn’t done and needs to do it. Remember, a change in the routine freaks her out so her not remembering a big part of the routine and the nurses and me telling her that she did in fact do it makes her little 3 year old groggy brain flip and she gets MAD! But once this wears off she is back to her normal self, just sleepy.

She was VERY irritable on Easter and all weekend due to the steroids SO we made the most with what we had. She did get to wear her fancy dress and go to church and did an Easter Egg Hunt at Grandma’s. She was bummed the eggs were empty BUT she still had a good time. Cooper of course did great at finding the eggs because he didn’t care of they were empty or not.

We have been getting along as best as we can. We have found our own rhythm in the house and it is probably different than others but that is okay. It works for us. She and Cooper are enjoying a semi-normal childhood with trips to the YMCA 3-4 times a week while I work out and a play group one day a week at Gilda’s Club with a Mother’s Day Out program at church for 3 hours one day a week as well. We just wash the crap out of their hands and it has become expected by them to wash hands A LOT!!!

With the weather getting warmer both of the kids get irritated on the days that it rains or is cold (gotta love Crazy Kentucky weather) but with temporary tattoos, movies, books, dancing and music we pass the time on bad weather days.

We did go to Orlando the week of Spring Break and went to the beach and Sea World. I will post pics and write another post just on our trip.

Hope everyone is doing well! Thanks for all the prayers, they are working.